Monthly Archives: July 2008

As I mentioned in my last update, I spent a good part of Friday very upset that Abbie’s dystonia diagnosis had been delayed so long, with such challenging consequences. But, by Saturday morning I was doing better at focusing on what could be very positive outcomes for Abbie with appropriate treatment.

We went to our normal speech group, made up of a few families who we’ve been with for several years. I was excitedly telling Lisa, Abbie’s speech therapist, about the new diagnosis and the hope that Abbie would gain more movement. She grinned and said, “When Glenn gets here, talk to him about dystonia.”

Glenn is the father of Shari, a little girl about Abbie’s age who is using a touch screen computer to communicate. I’ve watched her blossom over the last year or so, gaining enough motor control to really start using her device. So often, while watching Shari, I’ve thought, “If Abbie could even just move that much!!”

I told Glenn we’d seen Dr. Y the day before and Abbie had been diagnosed with dystonia. He started laughing and said…let me tell you a story…

They took Shari to the Lucille Packard Center at Stanford 3 years ago. A bunch of tests were run, and the specialist said, “She actually has two things going on.” (That sounds familiar!) They did a test which amplified the sounds of Shari’s muscles, and showed Glenn that muscles affected by spasticity sound different than muscles affected by dystonia. There was no doubt Shari had both. They had an answer, but getting treatment was a whole different story.

Once home in Hawaii, they worked for 18 months to get Shari’s neurologist to believe she had dystonia, to do his own research, and to finally be willing to treat her for it. They got started 18 months ago, so it turns out, all the wonderful changes I’ve seen in Shari have been a result of getting her dystonia treated. It just so happens that Shari’s neurologist is Dr. Y — SHE’S the reason he knows about dystonia, picked it up right away in Abbie, and is now willing to jump right into treatment. So…to Glenn, Dayna and Shari…thanks for being our road crew on this one, and paving the way for Abbie!

I am just amazed sometimes at how small our world is, and am now even more excited about what proper treatment could do for Abbie in the long term. She is just so darn smart — she learned “left” and “right” in her speech session on Saturday. Her silly mom has been telling her to pull the switch “to the middle” and “to the outside”. The wonderful student-therapist thought “right” and “left” would be more appropriate and useful, so she made up flashcards and cued Abbie with movement and toys. She picked it right up. So, if we can get that intellect paired with a more cooperative body…watch out world!! Abbie is going to have a lot to say!

Today we visited a new neurologist, to discuss him managing the Baclofen pump for Abbie. We spent an hour talking, and spent only a minute or two on the pump…just long enough to agree that it is not the solution for Abbie. The first portion of that hour challenged me greatly, as we looked in depth at both of Abbie’s MRIs, one right after her injury, and one from a few months ago. ( I must give a disclaimer up front that there may be too much info in this update for some, but we’ve learned something so important today that I want to share it in enough detail for other brain injury families.)

We’ve never had an indepth explanation of the injured areas, so I really valued the time Dr. Y. spent going structure by structure. It broke my heart, and I had a decision to make. I could either look at this very devastated brain and sink into despair about what may never be, or I could look at the images with reverence and complete awe, wondering how Abbie could have survived, and how she can possibly be doing what she is doing these days.

There is not one area in her brain that is untouched by her injury. Even her brainstem has evidence of damage and is not the normal shape. The ventricles are enormous, now filled with fluid to make up for tissue that has been lost. The Dr. said a few times, “This is chronic, this is not going to change or get better.” Thankfully, he was kind and I knew he was on Abbie’s side, so that didn’t hurt as badly as it could have. And, I have learned to trust in Abbie and in God more than films and prognoses.

Things got very interesting however, when Dr. Y. said, “Looking at these images, I actually think Abbie has two different things going on with her muscles. She obviously has spasticity, but underlying that is a movement disorder, called dystonia, where the muscles fight each other instead of one contracting and one relaxing. When you give her something like baclofen or tizanidine, it works for a short while, but then unmasks the underlying dystonia, so then things get even worse than they were. My mouth was agape, I am sure, because that’s EXACTLY what we saw in Abbie when we tried these drugs again after three years of not using them. No one could explain why a drug that was supposed to help actually made her tighter….until today.

He told us all this while Abbie was in the hall, so she wouldn’t have to hear the discussion. As soon as I wheeled her in, he took a look at her hands and called it “classic dystonia.” Most people who hold their thumbs on their palms (cortical fisting) pull their hands inward. Abbie’s have always been flexed up. He then looked at her feet and said the same thing…the outward rotation and the position she holds them in are hallmarks of dystonia.

The great news is that there is a medication to help with this problem! So , the plan is to take her off Tizanidine, put her back on Baclofen, titrate up to a good dose, and then add Artane for the dystonia. Using this method he gets results equal to those of the pumps he’s implanted, so he prefers not to do something invasive, and incur all the risks of having an implant, if we can stick with oral meds. I am VERY happy to go along with that line of thinking!

I am comforted to finally have an answer to my question of “WHY?” about her hips. I was so frustrated with myself for allowing her hips to dislocate when I knew in my heart it could have been avoided. I thought I should’ve had her standing sooner and more often (true), that we could’ve done some things differently in the first year (true), but now I realize those things wouldn’t have compensated for the fact that Abbie had untreated dystonia pulling on her femurs, that was actually heightened by baclofen. Her hips DID NOT have to dislocate and deform, if the dystonia would have been properly diagnosed and treated early on. You can probably envision the tears of rage, disappointment, and sadness that I’ve shed today. We seem to always have to learn everything the hard way, taking the longest route possible. So, I am hoping that Abbie’s story may help other families who are perhaps dealing with some of these same issues.

What I am holding on to , as the despair and anger try to cross the moat, is that now we can help Abbie. There is hope that we can make her more comfortable and more able to move. She doesn’t need to walk for her quality of life to improve dramatically…enough arm and hand movement for her to work a complex communication device, better coordination with her eyes to allow her to see well, using her tongue well enough to eat again…these would be huge, and I think they may be realistic. Just knowing that we only have one surgery on the horizon and not two lowers my shoulders at least two inches.

When my grasp slipped today, the rope of God’s love, tossed out by a caring woman, rescued me. I ran into Dawn at the elevators on Monday, and she said she’d recently been thinking of Abbie and I as she did her Bible study. (How she said it was too humbling and overwhelming to put in print.) But, she laughed saying she’d intended to write me a card, had gotten it out, and then not sent it. Boy, could I relate.

Well, today, tears streaming down, I saw an envelope on the counter that had arrived yesterday. I’d not had a chance to open it, and without a return address I had no clue who it was from. Turns out, Dawn decided to send that card after all. Ray asked me to read it aloud, so in halting gasps I said, “Thank you Lord Jesus for teaching us to REMAIN, to ENDURE, and in the end, TO FINISH.” She wrote a wonderful note inside and then said, “I close by claiming this scripture for all of you, and especially Abbie, ‘What is faith? it is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see.”

The verse that gave us Abbie’s middle name. I almost couldn’t bear it. God was reaching right down into my brokenness and saying “Remember!! Remember Who I am. Remember how I care for you, how I love Abbie. Do not faint. Do not lose your vision because it is not yet in sight. Remember Me.”

Thank you, all of you, who send prayers and thoughts that may not arrive in the mailbox, but rescue us nonetheless. I rejoice in the fact that we have a Father who gives us beauty for ashes. Looking at those images, that was all I could think…these are ashes, Lord…we trust you for the beauty.

I am naturally inclined to use sarcasm and humor to defuse situations that are not at all funny. Sometimes that’s a healthy thing, but during this journey I’ve found that those tendencies predispose one to becoming cynical. So often it has been people who have broken my heart, frustrated me to tears, and made me question whether they could get a 2-for-1 deal in Oz, so that they could find a heart and a brain! While I regret the areas of callous in my spirit, these challenges have also made the great people shine brilliantly in comparison.

I mentioned one, Susan, in my last update. But, I must toot the Horn of Appreciation in honor of her again. I received an amazing letter from her, as a follow up to our meeting. She took what could’ve been an administrative, dry, “check-the-block” correspondence, and turned it into a keepsake blessing. She started out, ” Thank you for allowing me to visit with you and Abbie yesterday. She is a remarkable person, just like her mom.” (OK, so flattery certainly doesn’t hurt!) But, then she continued, “Your update on Abbie’s progress was very exciting” and went on to detail standards that Abbie currently meets. She ended the letter with, “Finally, I want to acknowledge that the love and support you put into Abbie’s ongoing recovery is remarkable. Enjoy the little packages of success she delivers. While they may not arrive often, they are certainly a delight to receive and enjoy with the entire family.” Wow. This woman should be giving workshops to professionals on how to build relationships with families!!

Today we were visited by the school speech therapist. She is new this year, so had never met Abbie. I could not have asked for better timing! Abbie was just waking from a 2 hour post-Maria nap when Janelle arrived. I gave Abbie her switch, and she was off to the races. Over and over what I heard was, “She has so much potential!!” Janelle has worked with children who use communication devices, so we had a very fruitful conversation about how we can use them to support Abbie’s academic progress. I am so encouraged to have team members who I feel can really contribute to moving Abbie to the next level!

Later in the car I was thinking, “We knew it. We KNEW it. We knew it all along!! We knew Abbie had this potential.” I was grinning, laughing and giving myself mental high fives. Then I stopped. “Awwww, come on..be honest, ” I told myself. “We didn’t KNOW anything. What we did was listen. We listened when God reassured us in the darkest hours that all would be well. We trusted when He reminded us He had a plan. And even these things were not of us, but were gifts of amazing grace. So, I’m still giving high fives about all this business, but it’s with hands raised to Heaven, to give the credit where it’s due.

Tomorrow’s the IEP meeting, and Friday we’ll meet with the neurologist about the baclofen pump, and with Abbie’s case manager, so it’s a busy “Abbie Week”. I am hoping that I will be tooting the horn many more times! God Bless!!

Just want to give you an update about Abbie’s visit to the orthopedic surgeon this afternoon.

God is so good…the news today wasn’t, but He is. I absolutely love the doc we saw today (Dr. B.), because he’s a skilled surgeon, is extremely empathetic and sees Abbie as a person, not a case. He examined her, noting her extreme spasticity, and he, Ray and I talked for quite a while about the baclofen pump, the surgery, and the sequencing of these procedures.

Then, he sent Abbie for Xrays, since the last films are a year old.

As soon as he put them up on the light box, I thanked God yet again for Maria. She’d prepared me for this day, because she told me the right hip was out, and it was…completely. Most of the socket is gone on that side. The left side hasn’t changed much and is still somewhat in the socket. Dr. B. said, “Wow, whoever that was who told you that the hip was out is very, very good..because I couldn’t feel that.” I think my smile said, ” If you only knew…”

He said, “I don’t like it when hips come out forward, like hers are, because they don’t want to go back in. This is going to be a challenging surgery.” But, you know what….he said that so calmly and gently that it didn’t even hurt, it was just a statement of fact, something that we are going to work through.

So, God readied me through Maria, and then God orchestrated things to allow us to have Dr. B do the surgery…since Dr. O., Abbie’s Shriner’s surgeon, is in Afghanistan through at least Aug. With Abbies’ hip completely out, we can’t wait around to begin coordination. We love Dr. O, but we are extremely comfortable at Kapiolani, where Abbie has gotten all of her care and continues to receive therapy,and where Dr. B. practices.

Our good friend, Rob, is Dr. B’s partner and also an ortho surgeon. In the hallway he pulled me aside and said, “If it was my kid, I would want Bill(Dr. B.) to do it.” In a later hallway conversation that included all of us, Dr. B. asked Rob to scrub in and do the surgery with him, and Rob readily agreed. So, Abbie will have BOTH of them…I couldn’t ask for more!

The biggest hurdle right now is finding a person or team to manage the baclofen pump after the neurosurgeon implants it. In yet another stroke of providence, the meeting that Ray had to leave the appointment for was attended by a pediatric neurologist who does manage the pumps for patients that already have them. He is not a fan of having them put in, and has some reservations, so we are going to meet with him to hear his viewpoint. Dr. B. is not wild about them either, but as he puts it “I just don’t have any other answer for spasticity like Abbie’s.” I’m pretty convinced that a pump will have benefits for Abbie, that at least in the next 2-3 years will outweigh the potential problems. We’ll see..

The crux of the matter, as observed by that wonderful DOE person yesterday, is that Abbie is a smart little girl completely trapped in her body, as Rob also noted today. We are going to have to take some extreme measures to provide her relief and release, but I have faith it will be worth it.

I was so very proud of myself that I made it through the whole appoinment without crying once! I think it’s a testament to Dr. B’s manner, the trust I have in him, and the comfort level I now have. He didn’t sugar-coat anything, but we are ready to face what must be done.

Perhaps we’ve waited too long to proceed with the surgery, but many things are showing us that perhaps we waited for just the right time. I told Dr. B. that the documented gains Abbie’s had in the last 6 months will change the way DOE looks at, and must work with Abbie for the rest of her schooling years. She has shown she is a capable learner and motivated girl. Does that make it worth the changes in her hips? Looking at the films, I have to say, “I don’t know”, it’s a pretty tricky trade-off. We could’ve saved more structure and not proven who she is on the inside, but perhaps then she could’ve been a girl with solid hips whose hidden intellect was ignored. In the end, it doesn’t matter, because we can only move forward. So, that is what we are going to do, hopefully putting in the pump in August and doing the surgery in September if we get our dream schedule.

We covet your prayers for Abbie’s health and strength to get through these things. Please pray for her comfort as well, since that right hip is a source of pain. But, always, please pray with much thanksgiving for how gracious and faithful our Lord is. I see His hand so clearly in the details of today, that I cannot do anything but praise Him and relax into the comfort of His protective grasp. If I can end an update like this with a smile, which I am, it is only a testament to the power of your prayers and the greatness of our God.

Miss Abbie and I have been swimming together in a sea of misery this week. She slept most of the day last Thursday, which was odd, but I thought perhaps all the work we’ve been doing had just worn her out. That night her fever spiked to 104.3, and our adventure began.

She hasn’t been this sick in over two years, so I’ve gotten a bit spoiled by her good health, forgetting what all-night shifts are like. By Friday evening I could tell that I was not going to get away clean, either. Unfortunately, Abbie’s care needs didn’t give my body a chance to rest and fight back, and I slipped down the slope to illness.

Her fever remained high all weekend, and I camped out in bed during the day resting up for our nights together. Unfortunately, during the work week the rest of the world didn’t get the memo that now my days were my nights, so all chances of sleep evaporated as I answered calls, shuttled kids, and made appointments. But, on the upside, Abbie began to rebound on Monday, and today is fever-free with secretions that are no longer yellow. Mom is bouncing back a bit more slowly, but that’s of minor concern compared to Abbie getting healthy again!

Tomorrow is a big day for us, as we visit the orthopedic surgeon we saw for a second opinion last fall. We just found out that Abbie’s Shriner’s surgeon is deployed to Afghanistan through August…pray for Dr. O.!!! I don’t know what that means about timing and logisitics, but we should know more tomorrow. I am in a good place about all this, and surprisingly, it is because of a visit from a Dept. of Education person today.

Susan came today to update Abbie’s Individualized Educational Plan (IEP) in preparation for a meeting next week. We first met last fall, and she is the one person who totally “got” Abbie, seeing a smart little girl locked in an uncooperative body. She was THRILLED by the progress Abbie has made with language and reading, and showed me that in some areas Abbie is already meeting the exiting-first-grade standards. She had come up with some terrific goals for Abbie, along with wonderful ideas about how to work towards them — and mentioned more than once how much potential she sees in Abbie.

I told her about the impending surgery –oops, Matthew has issued an edict that in our house it is not called “surgery” but “the walking helper” to make Abbie feel better about it….so, I told Susan about the Walking Helper, and she said, “Well, you know there is going to be regression…”(boy, do I know and hate that)”BUT, you will be able to get it all back and move on to the next level. It may take longer than you want, but she is going to need to concentrate on healing for a while, and then we can get back to other things.” I so appreciated an outlook that is realistic and optimistic simultaneously.

I will try to post by this weekend to let you know what the surgeon has. Before I go, I want to tell you a story of another link in Abbie’s chain.

At church a few Sundays ago, at the end of an emotional week, Pastor asked me how I was doing. I knew that lying to a pastor is probably a double no-no, so I was honest by saying that sometimes it gets tough to stay focused on the big picture and not be overwhelmed by fear and grief. He said, “Abbie is helping so many people…” He must’ve caught the roll of my eye that communicated, “That’s swell, but I just want my daughter back.” He continued, “Well, let me tell you about one family that Abbie has helped this week.” Now he had my attention.

“I have a dear friend from college, Janne, whose beautiful daughter Kate, went with us to the National Championship Game in Jan.” (college football…they are all LSU fans, but please, keep reading anyway) Last Saturday, while on the way to a wedding, Kate was in a head-on accident and is in a coma right now. Janne called me on the way to the hospital, before they’d even seen Kate, and I told her a little about Abbie and about the website. She was so thankful, because she said they wouldn’t have thought of setting up a website, and it has been so helpful.” Somehow, hearing names and imagining faces of one family made any pain I’ve felt justified and bearable.

I’ve since been able to correspond with Janne, who along with her husband Charlie and Kate’s little sister Sarah continue to be filled with faith and stubborn hope as they brave this horrendous path …but, I know they would surely be bolstered by visits from some of Abbie’s Angels. If you have a moment, please go to www.caringbridge.com and search for “KateCrews” (all one word). If you don’t have time to go to the page, please just pray for Kate to breathe well on her own and to start waking up a little more each day. And, thank the Lord for how He redeems every tear and every heartache!

This week brought us to some painful conclusions, but God was ever so faithful to bring worthwhile lessons right alongside.

On Monday we went to PT, and I told Lynette, “I think her right hip is all the way out.” She checked it and answered, “Although only films could tell us for sure, it does seem that way..but, it seems to be coming forward, which is really strange since hips usually dislocate to the rear.”

I, illogically perhaps, feel that as a veteran of this journey, I now should be beyond the grasp of sleep-stealing sadness. But, that night I again felt the heart of the Psalmist who wrote about his “couch swimming with tears.” I realized that hip surgery was now not optional, and that most likely Abbie is in pain.

Maria came to see Abbie the next morning, and I told her of my suspicions about the hip. As she unfastened Abbie’s diapers to take a look, her eyes welled with tears. It was obvious that Abbie’s right hip looked different, and she said, “but it has come forward, and that is so strange.” She worked on Abbie for three hours, and was able to get the femur back into the socket. So, it looked much better, and it seemed that Abbie felt much better. But, it was just a temporary solution. Abbie’s hip problems are being caused by a misalignment of her knee joints as a result of the tension of some muscles on the outside of her leg and the atrophy of those same muscles on the inside of her leg. Maria agreed, after hearing about the need to reconstruct the right hip socket, that it is time to do the surgery, and to get the baclofen pump.

Although it hurt to hear it, in some ways it was the validation I needed, to have someone who has tried so valiantly to help Abbie avoid surgery say she needs it. We must do it not only to help her today, but to help her as she grows since growth will only compound her current challenges.

Maria responded to my regrets about waiting for the surgery by saying, “I think you’ve waited for just the right time. She is SO much stronger now than when I met her in January. She is in a much different place.” I later reflected on the fact that since we delayed the surgery in late November, Abbie has proven to the world she can read…that is such a precious accomplishment, and will be concrete proof to whichever professionals work with us through this process that not only is she “in there”, but that she is a a very smart little girl who merits their respect and compassion.

We will begin making phone calls tomorrow morning to set everything in motion. Please, pray mightily for our wisdom, for the right team, and for Abbie’s strength and comfort. I must selfishly ask you to pray that I can stay focused on the possibilities of a great outcome, and not be emotionally derailed by the enormity of the surgery or the difficulty of the rehabilitation.

God’s already begun a work in that regard. On Wednesday I was marvelling at the ingenuity, daring and precision of the rescue of the FARC hostages in Columbia. I thought about them, walking toward the helicopters as hostages, thinking they were just being moved to yet another jungle camp. I wondered how they reacted as they became airborne and the weapons suddenly pointed at their long-time captors, and the false FARC members announced, “We’re the Columbian Army. You are free.” The weapons of the enemy turned, and gave them freedom. The weapons of the enemy turned…. and gave them freedom.

I rolled that phrase around in my head a hundred times before a hope suddenly emerged from the fearful fog in my mind, that our enemies, the hip surgery and pump, will give Abbie freedom. So, we will walk toward the helicopter (or OR in our case), with that hidden hope in our hearts.

Freedom remained a theme this week, of course. Abbie and I stood at the end of a cul-de-sac and watched a terrific fireworks display. With each “boom” I would whisper “We’re free!” I would imagine the fireworks being the initial signal of long-awaited freedom, of a battle finally won. Looking at it anew, as new, made it clear that next to salvation our freedom is the most sacred gift God could ever have bestowed upon us — how shall we steward it? Driving home I looked at every flag, and wondered how we would feel if each one of them had been thrust into the ground as a defiant proclamation of liberty, rather than as a holiday decoration.

What these reflections stirred in my heart was righteous defiance – knowing that battles hurt, but must be fought when freedom is at stake. And, when it comes to freeing my daughter from the chains that are holding her — well, is anyone foolish enough to take on a Mama Bear when her cub is at risk? So, one day we will celebrate Abbie’s freedom. But, for this day, we commit to doing what we must, come what may, to one day hear, “My name is Abbie. I am free.”